Ethan’s Journey

  Ahhhhh…look….those were the days I could sit.  Happy Birthday Paul! For Paul’s birthday, he had to set his alarm on his day off and heave me into the trunk and take me to physical therapy at 7:30 am. What a precious gift I am to him! Ha! I had my physical therapy session. I am trying to maintain what little muscle mass I have as I have been laying now for so long. The physical therapist said that you lose 3% muscle mass with each passing day of non-movement. I worked for a bit and then took a break. I have tried to distance myself from the Walker. I was upright long enough to heat up some chili and carry it to the couch. It was painful but I did it. I also walked unassisted to the bathroom. Independence has always been something I have strived for. I HATE relying on others. It’s so annoying. I want to be the one to help, not BE the one helped. I just have to accept it and move on.  I appreciate all the help we have received. I wish I didn’t need it. I did some deep thinking recently.

Today was another flat day. FLAT! 5 more days until my consult. Ugh! Sometimes I wonder if I can make it another 5 days with this horrific pain. Then a consult. I hope they have a quick turn about time for treatment. I wonder if humane euthanasia will be one of the treatment options. If I were a dog, I would wander out in the woods and just die on my own. However if I were a dog, I may also opt to gnaw my leg off and that just seems gross. Maybe I should focus on the other treatments they may offer. I actually am maintaining an optimistic outlook. I am feeling fairly calm and hopeful that I can be fixed.  That may be naive of me, but it could just be my coping skill. Thankfully work was busy today. It makes the day go faster, keeps my brain stimulated and gives me purpose which is important. My mom came over to visit. She brought us items for dinner. I opened my Christmas presents from her. Of course I was spoiled. I am wearing my new soft Jammie’s with dogs on them. So soft and comfy!

 The stars have aligned for me. I got a call first thing this morning that the neurosurgeon himself, directed the staff to call me and set up an appointment for January 3 rd!  The staff said that he has never done this before which makes me feel even better that someone cares. This is amazing and I can’t thank my friend enough for pulling this off for me.  She has worked with him and knows him well and trusts the way he practices medicine. This makes me feel more confident that I will be able to get the appropriate help I need. I can hang in there until January 3 rd. Patience is such a hard practice. Patience allows you to trust the “system” and know it will come through for you. It takes a lot of trust in something though. Somehow patience works out for me usually. It is just so hard to be patient sometimes in this instant gratification world we live in. I also have to look for how it worked for me. “Let’s rephrase that.” This is a phrase that was taught to me by a student from they p

The dogs are staying close. Phineas is out of sorts. He follows me around the house and walks with me. He isn’t relaxing all the way because he is keeping track of what I am doing. If I move a little, he is up checking on me. He lays right next to me. Dogs are such good friends. Little Jiminy is enjoying the radiant heat from the heating pad.   I worked all day laying down. I have this down pretty good. I am worried about my trip to florida and will likely have to cancel. I am so bummed. I even had a counter on my phone 16 days, 14 hours, 6 minutes and 8 seconds. I know I won’t go realistically, but I am going to do everything in my power to better my chances. I am determined though. Let me be determined until I accept the truth of not going. It is my motivation to get me through the day and do all my stretching and exercise. I was able to get an appointment for February 28 th.  I know this is not an acceptable amount of time to wait. With the help of a friend, she is going to try to g

  I was able to come home today! Yeah! I have to follow up with the spine center tomorrow to get a consult appointment. It is an expected 2-4 week wait for an appointment which makes me angry. I voiced how I felt this is inhumane. I will be calling every day to see if they can get me in sooner. Squeaky wheel gets the grease, right? They aren’t even sure what procedure they would be doing. It is based on how my improvement continues. Paul came and loaded me in the trunk so I could lay down for the ride home. Glad to get out of that craziness. With all the medications I am on, I do slip into La La Land now and again. My mind is completely blank. It is such a weird feeling.  We got me home and I settled into the couch. I did some work and then we decided to do our family Christmas. Ethan has expressed anxiety about opening presents in front of people in the previous days before I went to the hospital because he doesn’t react to the present, he just opens his and makes no noise or facial e

At about 10:30 pm last night, I got my next dose of morphine. I was then able to use a walker to hobble to the bathroom. I was pleased by my effort. When I came out, the orthopedic surgeon came to meet with me. He saw me hobbling along back to my bed (which I think was a good thing). He was really nice and we developed a plan. He told me I have two severely herniated discs. He is adding iv steroids. Finally, someone is listening. I told him that I needed to reduce the inflammation so I could be more able to do physical therapy and ambulate around. Then, I can strengthen that area and resolve the herniating, preferably without surgery. He said “we can start the steroid tomorrow morning.” Me: “ is there a reason you are waiting until then? I feel like I would like to start now to get a jump on resolving the inflammation.” Him” I suppose we can start it tonight.” Me: “do you have some in your pocket?” He chuckled. “No I am all out” I shook my head and teasingly told him that “I was disapp

 So, the noises in the hospital are so interesting. I have a neighbor that is watching old time movies, the guy coughing his brains out across the hall. The lady kitty corner to me having some sort of cardiac event. The lady down the hall coughing so aggressively I am not sure how she is still alive. I slept with my mask on to say the least. The hot and moist collection of morning breath in my mask was reminiscent of the days spent with Ethan in icu. Not pleasant. I requested a walker to get to the bathroom. The nurse insists on walking me there. This poor woman. She takes the brunt of my weight as I am bent over hobbling along.  When I woke up, I still had no relief. I also asked for some sort of stool softener with oxycodone. I would assume this would be a proactive standard protocol with opioids, which sadly isn’t the case. I want to make sure it doesn’t become an issue for me. Luckily they added them to my list. My MRI showed a severely herniated disc with other discs bulging. This

 I woke up this morning in crisis mode. 9:30 couldn’t come fast enough. I asked Paul to take me to the doctors. Paul has only come to my doctors appointments a handful of times. Big things like labor, kidney surgery. So for me to ask him is a big deal. I was stressing about how I was even going to get into the building, let alone survive the appointment. Paul started the car. I assumed it was unlocked and convinced myself I could walk to it alone. I got there and it was locked. The pain was excruciating. I turned to walk back to the house and the tears were streaming down my face, my sobs more than audible.  “Why are you crying?” Paul asked. “Because it just hurts so bad”. I was in distress. I climbed into the trunk of the van. I needed to lay flat and the seats are down back there. It’s not like a tiny trunk of a car. It’s wide open with heat. Just want to be clear Paul wasn’t stuffing me in a small space. The doctor said to go to the emergency room. We headed over. My hesitation was

 Today sucked. I was not the boss of my pain. I drove Paul to the car dealership to pick up his work vehicle. I had to pull over and lay down on the way home to get relief. It was a 20 minute drive. I became nauseous and vomited a few times throughout the day. I did read this is a symptom of sciatica pain. I struggled through work all while calling around to emergency rooms and urgent care trying to find out if they had someone on staff to do cortisone injections. I called the spine center and doctors office again, but no one had any real suggestions besides go to the emergency room. The smallest wait time was an estimated 8 hours. I can’t be at all vertical so that was not going to happen. I even entertained the idea of calling an ambulance so I could at least be laying down. Short of driving my car into a wall, I am struggling big time. I have a doctors appointment in the morning. I am feeling drained, self pity and my stomach is still not happy. Each passing minute felt like an eter

 Today at therapy we discussed how Ethan has been acting. How he has been withdrawn and communicating very little with family. The more we talked, the more she felt things were weird. She also thinks there are many factors influencing these personality changes we have seen over the last year. She brought up a good point too. When discussing the seizures Ethan had, I was telling her how blue Ethan got. She said hypoxia can also have changes to the brain. Who k owns. He lacked oxygen multiple times. At one point he was oxygen level was sitting at 82 and that was his normal for a few weeks (normal is 95 or above). I went to the chiropractor. He said my one leg was about an inch longer than the other due to what is going on in my back. He did a little massage, a little pressure, computer adjustments and hard core adjustments. I went tonight to donate blood. I am so glad I did. One donation can save up to 3 lives. The questions they ask ahead of time are hysterical. Some people live quite c

 Ethan was home all day. We exchanged a few words. “Good morning” that was met with a grunted “hi”….which, I will point out, still counts as acknowledgment. I am supposed to be airy and non-parenty when I interact with him. I have been putting off telling him he is due for more bloodwork.  “Hey Ethan, at some point this week the transplant team wants you to get your labs done.” That was as airy as I could get….and I even practiced in my head, ahead of time. It just seems so unnatural, but I am following the directions the best that I can. “I am not getting labs done anymore.” He said very straightforward and blunt. I just left it at that. I will circle back tomorrow and let him know (as it was modeled for me) that I have an opening in my schedule if he wants me to take him, or he can go at his convenience. We do this song and dance every time we go. I wish these drugs would regulate all ready. This is so old. Tomorrow is work, chiropractor, therapy and then blood donation. I am worried

I had my physical therapy appointment today. My therapist is nice. He tried a few things but my numbness and pain didn’t really subside. I was sent home with some exercises to do in addition to the pleathera of stretching and exercises I am  already doing. I told my therapist the if he wanted me to do them twice a day, I was going to do them three times a day and show this pain who is boss! I am pretty sure I was the topic of his dinner time conversation with his family about the lunatic lady hobbling around swearing at her pain. Now that is classy! I had a busy work day, but was able to accomplish my tasks. Avery had PJ day at school and looked cute as she paraded out of the house this morning. Ethan went to work this morning just as one of my besties came over with a Christmas surprise. She arrived at the perfect time as I had a 45 minute break and was able to visit with her! I think we both needed it. I have an appointment at the chiropractor on Wednesday. Wednesday is going to be a

I read this today. Holy crap. I have been the person silently pissed about people complaining about things that I would consider trivial. But that is the point I WOULD CONSIDER TRIVIAL. That doesn’t mean they ARE trivial to the person experiencing the struggle. What a good lesson to remember.  I think we have probably all been guilty of this. I will likely be guilty of it again. But it is a good reminder to reset my thinking. I have really felt a calling lately. It’s been nagging me and nagging me. I have been compelled to make an appointment to go donate blood. I am going Wednesday Evening. I am kind of excited as I have not donated blood before. My fear is that I will feel too tired afterward. A small price to pay for helping. I know there is a shortage going on. Many someones donated to help Ethan. In fact, Ethan helped contribute to that shortage with his many transfusions received. I am interested in donating plasma too. We will see how this goes. I don’t like to actively particip

 Today was the worst day yet with sciatica. I can understand why people turn to street drugs just to get a break from the pain. Luckily, I can still find positions where I can get relief, they just aren’t appropriate for public display.  Laying on the floor in the grocery store doesn’t seem sanitary and I am afraid they would call the police for a wellness check. I just had a hard time getting any sort of comfort and accomplishing anything. This is with multiple stretching and exercise sessions scattered throughout the day. Friday can’t some soon enough with my follow up visit.  I keep telling myself I have to be mentally tough and move forward. But damn…..nerve pain is no joke. At least we were able to have fun this evening and play cards while listening to Avery’s epic Christmas playlist. Ethan stayed tucked away in his room all day again today. He has cleaned it and it looks really good! It’s hard to believe it has been two years since the horrific morning of Ethan’s second cardiac

I arrived for my 9:30 COVID/flu vaccine appointment early. Of course I did. I am always early. They took my insurance card and paperwork. They greeted me right away and were friendly.  I stood at the window for about 10 minutes as they took my info and entered everything in. My sciatica was not cooperative and I was dying a little on the inside.  They finally had me take a seat. Phew.  Then some lady comes stomping in. Literally stomping like a Clydesdale horse with horse shoes on, in a parade. She does not wait for the lady to finish what she is doing and blurts out “my mom just came in to pick up three medications for me. She only came home with two and YOU forgot the third one.” Wow! She was quite presumptuous and a bit rude and accusatory. I couldn’t help but stare at this train wreck. The lady tries to explain that yes, they sent home two medications because the third one is a controlled substance. Typically they ask for a few days notice with those because they have to report the

I walked in to Avery’s room this morning with my coffee in one hand, Jiminy in the other, and Phineas right beside me. I actually accidentally woke her up. Apparently he alarm didn’t go off.  Every morning we have this wonderful little routine of me drinking my coffee on her bed and sharing tok Tom’s with her. We have a bit of mindless chatter. When the dogs are with us, we laugh at them. I completely enjoy every second of it. Then she leaves for school and I have to be an adult.  Today I went into hyper speed work mode. With all these new positions to hire for I had to get cracking. Cracking I did. Now I have to sit back and wait to see what happens. I am hopeful my hard work pays off.  Ethan and I were home together all day. He stayed in his room. He came down to eat but I was on the phone. It’s so weird that he wants to be so secluded. Later tonight he came down to refill his huge water silo he slings around. I walked by and gave him a little shoulder rub. It’s weird that we have su

 As you go about your day, remember that there are people losing loved ones this time of year. There are people incredibly ill. I was feeling sorry for myself that my sciatica was so bad. Today I paused and was thankful I was able to work despite it and my situation wasn’t worse. I had a productive work day. Then entire day I kept hearing a lot of shenanigans from Ethan’s bedroom. At one point I heard a machine type noise. He later came down with our Roomba (we named him Chauncey). I swear Chauncey was eating all the dirt in his room for like an hour. His room looked amazing when he was done. I walked in and didn’t even recognize it. As I am learning in the book I am reading, I am supposed to be working on verbally affirming Ethan. I put forth no effort as the affirmations poured out of my mouth. “Wow! This looks amazing”. Ethan cracked a little bit of a smile. That is progress. I will continue working on reading my homework and trying to apply the techniques. Fingers crossed it will w

As the days go on working from home, I am surprised that I am not sick of being home. It’s almost as if it is even harder to leave the house than ever. I am such a home body. I have my dogs, coffee and fire place. Theo the bunny got some outdoor time today. He was chomping on left over flowers. I took the dogs for 2 loops around the field. It was sunny and wonderful. We all benefitted from sunshine therapy. We have had some unexpected changes at work which has caused my number of active hospitals to go from 10 to 27.  I am struggling to keep up but am still making time to get in my “motion is lotion” time. Today I really enjoyed the work. It seems weird but when it came quitting time, I didn’t want to quit.  Paul got to choose a Christmas gift from his company. He chose a speaker/karaoke machine. I am sure it is because he enjoys my singing voice. He then shared he thought it would be fun to get out at the campfire up at the islands. He is so funny. I went to say goodnight to Ethan and

 My presentation went well today. I feel like it could have been more polished but I was over all, happy with it. I had students engaged at the end. It was a busy work day for sure. I was finally able to get a physical therapy appointment.  I got a phone call and the soonest appointment available was next Monday. Thank goodness for a flexible schedule. My leg teeters between feeling normal, to pins and needles to put ride excruciating. It’s a fun game I play every-time I stand up to see which it’s going to be. Ethan went to work all day and then came home and went up to his room. I was hoping he would sit with us while we watched Shark Tank. That’s ok. I wasn’t hanging with my parents when I was 19 either. I did my ceremonious “good night, I love you.” On my way to bed. Paul made it home safely. He is crazy. I did a lot of stretching this evening. Manipulating my spine, motion is lotion. At least I am going to keep telling myself that. Today was more like motion is like the sting of 10

I went to bed around 1:00 am. Paul’s alarm went off at 4:00 am because he was flying down to pick up a car and bring it back. We need another car like we need a hole in the head. But it does look cool and it was fairly inexpensive AND most importantly….rust free.  He spent the entire day driving home.  I did a lot of yoga stretching today. It did help. I was able to do a bit of food prep and clean up the kitchen (with Avery’s help) from the cookies yesterday.  Avery and I geo in a couple episodes of Handmaid’s tale. One of the episodes was one that we were left cheering. We stopped there and will return on another day to finish watching. I practiced my thrown together presentation I am doing on Euthanasia. I am hoping it is good. I have no idea how many students will be there. I also am hopeful technology cooperates and it goes smooth. Of course I want it to be epic, but with my topic, I am not sure I ever could reach “epic” status.  Ethan spent the day in his room. He alternated playi

 Today was fun. I did my exercises and stretching. We had a leisurely morning. Made lots of cookies.  Then I took Avery and my second daughter, her BFF shopping. We had so much fun. I really enjoy watching the two of them banter.  We then went grocery shopping. I bought way more than I should of. Now I have to do meal prep tomorrow.  We did some thrifting with much success for all three of us. Woo hoo. I finished add the day with meeting up with some work friends. My cheeks hurt from laughing. My voice was gravel-y from singing  along with the music and scream chatting over live music at the bar. I was so thankful I was invited. I am thankful that I worked with a group of people that still think of me as a friend.  At one point, I used the restroom. I noticed there was a small area in the blinds that weren’t private. I didn’t like the fact that someone outside could be peeking in. I went to adjust them and a rolled up dollar bill fell out. It looked like a Coke Bill. Didn’t want that t

 Today I called the doctor. My pain was pretty significant….which I am no sissy….and I called my do tor’s office. They told me to schedule they would be about to get me in for 4-6 weeks. They said to schedule a telemedicine visit. I did. An hour later I met with a doctor. 1. Having sciatica pain. 2. Prefer not to take meds and save my kidney. 3. Have been actively doing physical therapy exercises at home. 4. Would like an MRI. She told me that the insurance company wouldn’t approve an MRI without 6 weeks of physical therapy AND chiropractic work. I asked what my chances were of becoming paralyzed if I went to a chiropractor with. A bulging disk. She said it shouldn’t be a problem. She followed up with if I become incontinent with my urinary or fecal content (Um…..what?) go to the ER. You better believe I would. There was more back and forth and it was so aggravating. So I will do the physical therapy. I am a bit nervous about the chiropractor, and then go from there. Ugh. What a game.

In therapy I learned that I am being to “motherly” to Ethan. I understand “why” I do it. Otherwise he will just go amok. But I am supposed to be more “airy”. Ethan missed the crucial stage of developement where he was supposed to rebel a little bit, branch off, grow. He had a good thing going the first part of his junior year. He was then told he couldn’t be around friends, he was told to get poked and prodded. He was told to move away. He had no choice over his medical decisions except life or death. Then when he was finally free, he was told not to drive (because of seizures). We told him to go to college. And the list goes on and on. I still have to tell him to get bloodwork done. It’s me. Hi! I am the problem, it’s me. So I am supposed to work on my communication style with him. Instead of saying “you have to go for bloodwork tomorrow” I have to rephrase it to “My schedule is open tomorrow. If you want, I can take you to get bloodwork.” Instead of “I forgot to pick your meds up at

  Avery had her induction to the National Honor’s Society. We are incredibly proud of her. I decided that I am not mature enough to go to those events. Paul and I were exchanging glances from time to time and trying not to laugh. We did witness a beautiful moment of four generations of women. Great Grandma was pinning her Great Granddaughter. It was really a sweet moment. It is cute to see Avery with her friends. She flutters about like a little friendly fairy. She shares smiles and laughs with people.  We ran into a teacher that Ethan had and was really kind to Ethan. I introduced myself and thanked him for being so encouraging to Ethan. (I am not the mom that goes to open house, wayyyyyyy tooooooo crowded and people-y. I wanted to meet Avery’s chemistry teacher. I had a joke prepared that Avery forbid me to tell. “Be like a proton and Stay positive!” That was my epic pun. “NO, You absolutely can’t tell that joke. He didn’t work so hard to become a doctor to listen to that pun.”  I am

I did a lot of stretching today to try and get relief from this sciatic nerve pain. Ugh! Act like I have ants in my pants and I try to find a somewhat comfortable position.  I am doing my stretches, my strength training, my walking exercise because I am NOT a jogger. Ethan fell asleep early evening. He had a therapy session and I think he gets drained from them. At work I get to be part of a group of people that is heading up a big game of Vet Tech Trivia. First prize is $500. It’s serious. We did a practice run today. We have to iron out the kinks and look for spelling errors. It is quite an operation. I look forward to it. Avery and I watched a few more episodes of Handmaid’s tale. Every episode leaves me furious, intrigued and rooting for the under dog. Avery and I also like to discuss how the characters are changing and evaluate the story. I totally enjoy it. This was my gift today.

 Ethan worked today. When he came home, I told him dinner was on the stove. He took a healthy portion and went up to his room. No one has heard from him sense. Avery shared that on Wednesday she would like for me to pin her at her National Honor’s Society Ceremony. “Um, yes please!” I pretended I was all kissed off about it but I am so proud of her. That was a lot of work. Today went well work-wise. I was able to get lots of work done. I am a bit tired though. Too much fun with Sarah I suppose.  I also caught the dogs getting along today.

 I wasn’t able to post yesterday because I was having too much fun with my Sarah! We completed our Christmas shopping and wrapped all of our gifts. The hotel lost power yesterday so some of the wrapping was done by the fading daylight. The wind was so out of control, that it stole the power from us. Today we said our goodbyes. We plan to travel to Orlando in January together for a Veterinary Conference. After the conference is over, we are heading to Tampa to visit their zoo. We are going to feed the giraffes. A bucket list item for me. This evening, we celebrated the upcoming holidays with watching the Brockport Parade of Lights. It was well executed and festive. It was a bit chilly but we survived. Afterward we had dinner with some family and friends. I am tired from a busy weekend.

 I had to call the airline today to get one of my tickets refunded. Long story short, after an hour and a half, (1 hour and 33 minutes to be exact) the issue was finally resolved. Such a long phone call. This weekend I am off with one of my BFF’s. We are getting our Christmas shopping and wrapping done.  This is an annual trip that has been missed for the past couple of years. It is exciting to be able to spend time with her. We had some yummy drinks and great conversation. Very therapeutic indeed!

 So my coworker and I got the attention of…now stay with me here….my boss’s, boss’s, boss. She sent us a shower of praise today. Wow! Cool! My co-worker and I we exchanging virtual high 5 ‘s. I got home at about 2 am, so this morning when I woke up at 6, I was not mentally sound. I decided to go back to sleep with a snuggly Jiminy. I woke up around 8 with a little more happening between my ears. Avery and I went to some counseling tonight which was pretty good. We both have homework assignments. I think everyone should have some form of therapy. As I was getting ready to go to bed, I made Ethan accept my hug. He hasn’t been saying much lately. He mostly has stayed in his room for the past week or so, with the exception of last Friday night and when he goes to work.  Tomorrow is a “comp” day. I will be mostly treating it as such. I am also hoping to get some relief from sciatic nerve pain. Fingers crossed.